Please know that there are many types and grades of brain
tumors. Some tumors can be removed with surgery depending on
location and grade. (grade refers to growth rate) I have a Glioma
type tumor. It is an Astrocytoma, grade 2. My tumor is considered
very slow growing but because of the location and type it is
not a good candidate for surgery. As my neurosurgeon explained,
we have to weigh quantity of life with quality of life.My
treatment was 6 weeks of daily radiation. It will be a few months
before results of the treatment are realized. Currently I am
doing well and am back at my job as an elementary school teacher.
I had many strange symptoms leading up to my diagnosis. I
now know that some of the symptoms were most likely partial seizures.
Some of the symptoms are typical of certain types of migraines.
I say this because I do not want you to think that if you may
be experiencing some of these symptoms, that you must have a
brain tumor. I do want to encourage you to seek help and be assertive
in reaching a diagnosis if you have symptoms that do not go away
or have an explanation. You know your body better than anyone.
I am not a medical professional. Any medical information I
share is information that I have learned through my experience
and by reading and talking with doctors. It may not be applicable
to your medical situation and should be verified.
I hope that my words can in some way help anyone that is facing
such a challenge. You are not alone.
I Must Be Dreaming
I hear someone saying, "she keeps saying that every time we pass by here." I hear my husband's voice and feel myself being rolled on a stretcher down a hall. Later I wake up because something is hurting my arm. It's burning and very painful. I open my eyes and see an I.V. and realize I'm in a hospital room. I cry out about the pain from my arm and a nurse and my husband come. The dilantin I.V. is too fast and they slow it down. I say "where am I?" and my husband tells me that I had a seizure during the night and was taken by ambulance to the hospital. He heard a very loud thump and found me face down on the floor. I have a very big black eye from hitting the wood floor. I ask for my son and he comes. A man in a white jacket tells me the CT Scan (catscan) showed a lesion on my brain. They want to do a MRI (Magnetic Resonance Imaging) I drift in and out of awareness. I sleep through the MRI. Later I tell my 16 year-old son to go to school because he has two tests and its the last week of school. I convince my husband to drive him there. I am too tired to feel shock. Instead I feel that Im in a dream and will eventually wake up.
Later I am released from emergency and sent to meet with a neurologist. He is the same man I had seen in January when I had a MRI of my neck. When I see him this time I ask, "Do you remember me?" "Yes" he replies. I ask why I didnt have a cranial MRI before and he explains that it probably wouldnt have shown this problem anyway. He tells me he thinks Ive had a stroke, whats called a migraine infarction. I think about old people and strokes. I am 37, I exercise regularly, eat healthy foods, how could this be?
We look at the MRIs on a light box in the hall. I start to feel weak when I see the pictures of my brain. I need to sit down. I get a dilantin prescription. Dilantin is an anti-seizure medicine. We schedule another MRI in one month.
My husband and I go home in shock and stay close. We dont want to be apart, not even separated by rooms. It takes over a week for me to feel that the experience was real and not a dream. As we talk to coworkers and family it becomes more real.
I am scared and angry at my body for letting me down. I no longer trust my body. Im afraid to take a walk, afraid I might have another seizure. I make my husband buy me a medical bracelet. I never wear it.
Listen to Yourself
Why didnt I listen to myself when my mind said, "You have something wrong here." I ignored and made excuses for these symptoms. When I did begin to worry I talked with health care professionals who made me feel I was doing what I needed to be doing. Still I worried inside. Why the headaches, neck pain, vertigo, flashing zigzag lights, visual memory problem, and deja vu? I thought I was going crazy! Was I a hypochondriac? I quit telling anyone when I felt bad. I tried vitamins, Kava Kava, massage, breathing exercises, reading about migraines, x-rays, physical therapy, chiropractic adjustments, pressure points, stretching, talking to friends, books on neck and back pain, neck exercises and more. Then I just ignored it. The doctors werent listening. I wasnt listening to myself.
This all happened over a 3 year period. These symptoms didnt start all at once and some may not even be related to the tumor. But they were my wake up call and I wasnt listening. I believed that the health care professionals knew more about my body than I did. That was my mistake.
On the way home from Bellingham on June 6, 1999 I felt very strange. It was similar to other times that I had experienced in the past but was more intense. I had vertigo and hot flashes and nausea. I felt very ill. I began to think about how terrible it would be to have an inoperable brain tumor. This thought came very suddenly. I felt like I was going to faint. My husband was very concerned and as soon as we were home I went to bed. That night I had the seizure. Had my brain been trying to tell me what was wrong? Why hadnt I been listening?
This summer I learned how to wait. How to be patient. How to really go on living when you don't have answers. I had my 2nd MRI on July 13, my 38th birthday and my husband and my 10 year anniversary (of our first date). We thought it would bring good luck. I went in expecting to know what was wrong. Was it a tumor or a stroke? I would find out today. I left feeling devastated. The MRI was still inconclusive. Another month and then we would know. I hadn't imagined that. The next month was difficult. I tried not to think about it but couldn't last two minutes. People invited me places but I wanted to be alone. To think and digest it all. I was very lucky because I had the summer off from work. I am an elementary teacher so this gave me a luxury that many people don't have. My husband was my rock. He listened and shared and helped me learn all I could about my situation. He got information about strokes and tumors from the internet. We asked the neurologist if it ended up being a tumor what would be the next step. He was hesitant to tell us information. I kept asking what if's. I wanted to know what I was dealing with if it wasn't a stroke. It helped me wait. No matter how bad the situation might be, it couldn't be as bad as my imagination might make it. Knowledge meant power and that I had some control. I could wait if I knew what the next choices might be.
Sometimes it felt like I held my breath for the whole summer. From June 7 until August 16 I waited. On August 16th I could breathe again. The MRI confirmed I had a tumor. At least now I knew what to fight.
The first MRI I had was in January 1999 for neck pain. It was a cervical one. It was very scary. I didn't realize how close my face would be to the ceiling . It felt like being in a coffin. I put the earplugs in and they positioned my neck. I had to wear a mask over my face that was like a catcher's mask. I was moved into the tube and when my eyes opened and saw the ceiling a few inches a way, my entire body bolted! I yelled,"Let me out!." The lady said, "Why didn't you tell me you were claustrophobic?" "I didn't know!" I replied.
Now I 've had six more MRI's. I'm an expert. I don't wear earplugs because it makes me feel more claustrophobic. I have my eyes covered and do not open them while in the tube. This can be for as long as 45 minutes. I ask them to tell me when we are between images so I can wiggle my fingers and toes. After the first MRI I had to go home and have a shot of whiskey. Now I get through it because I want to know the outcome.I can deal with the nerves and fear because I need to do it.
Everything's relative. After the seizure I had to buy a pill case for organizing my dilantin each day of the week. I was devastated. Oh my god! Only old people had these things. I couldn't believe that I had to take 3 pills a day.. Me,who didn't even take aspirin without a great debate with myself. Now it doesn't matter anymore. It's a very small detail. If it helps me to be healthy then so what! Everything's relative!
About a week after the seizure I felt the shock wearing off and other feelings appeared. I still couldn't believe that I had no memory from the time I went to bed to the time I woke up in the hospital. I felt a strong need to talk about what had happened, to analyze each step. My husband understood this and patiently answered my questions even though he was still reeling from the trauma of being jolted awake in the middle of the night to find me in a full seizure on the floor. As I began to piece together the events, I had flashbacks. First it was a face of who I thought might be the ambulance paramedic. Then a voice saying my name and telling me I had just had a seizure. More details began to emerge. With this remembering came tremendous feelings. I felt my whole body react with trauma and then a strong need to meet the face I was remembering.
I called the hospital and found out the name of who had responded that night. I went to the hospital and was told one of the paramedics was working. The one who had not been the driver. I introduced myself and sure enough it was the face and voice I had been remembering! I hugged him and thanked him. I felt shaken and intense emotion. A special bond for the man who had calmed me down and reassured me on the ride to the hospital. I wasn't completely aware during the ride but somehow my brain had stored this memory of face and voice. Remembering helped me accept what had happened. That it was real and not a dream.
I had a perfect shiner. It looked like the old cigarette advertisements that said "I'd rather fight than switch!" When I closed my eye it was a large blue circle. Somehow I had hit our log bed and wooden floor when I had the seizure.
People are curious. I'm sure some meant it as a way of finding out because of concern. The black eye became a way for them to ask. "Wow! what a shiner! What happened?" or "How did you get that?" or they would look at my husband and joked about him doing it. It made me not want to go out in public. I must have been asked at least 10 times a day for 2 weeks.mostly by complete strangers. My sweet husband became so irritated at one stranger that kept staring at me and finally asked me what happened, that he responded " The next person that asks her is going to get one from me!"
At first I shared little information but after awhile I just said "I had a seizure..." People always seemed surprised and embarrassed. I learned that I would never ask someone about a mark on their face, especially a stranger. If I was concerned I would find a way to help without asking such a personal question in such a casual way. Maybe they thought it was domestic violence ? Or maybe they were just being nosy?
Now I know that no one is to blame for my illness. It is no ones fault that I have cancer. It isn't the fault of the doctors,chiropractors, physical therapist, orthopedic surgeon, or neurologists. They are all human. Discovering cancer, diagnosing it, and treating it are very difficult. I am the only one to blame. I live in this body and know its rhythms. If I blame anyone it should be myself. but I have already forgiven myself.
I can't blame God. God does not select individuals to have this ailment or that tragedy. God only gives us strength to deal with our challenges, whatever they might be. God is whatever you what to call it. Buddha, The Great Spirit,The Holy Father,all of these labels are what I experience when I feel my soul. God is blameless,so I guess cancer is blameless.
A Hand To Hold
I would not wish cancer on any relationship. It is frightening and lonely. As close as two people can be, one must take this journey alone. Through my journey I have always had a hand to hold. My husband,soul mate, and best friend has been there to grab on to. When I felt I couldn't take anymore he would hold my hand and give me strength.
Though he was afraid and dealing with his own feelings, he tucked them away and was my rock. He gave me hope when I wavered and calmness when I panicked. After doctors appointments he let me cry on his shoulder and then told me the positive things he had heard. When I was too emotional to listen to facts he listened so he could tell me later. Always I had a hand to hold.
Many people are alone. They have suffered great loss and deal with challenges without a hand to hold. They show great courage and bravery.They prove that people can overcome and accomplish great things without anyone but themselves to help them through. This is not easy.
Too often we realize that we depend on one another when we need each other the most. We are all connected. Life is about loving and caring for one another. If you are dealing with cancer or another of lifes challenges, I wish you a hand to hold. If you are not dealing with a challenge, may you reach out and find a hand to hold on to, help someone, just as I had one to help me through.
Stay tuned for updates. Feel free to send me comments at:
sandy(put the "at" symbol here)sandybeardsley(put the dot here)com
--the reason this is not a email "link" is to stop the junk email purveyors from automatically harvesting my email address.
Note from Dan after Sandy's death... Emails sent to her address will still get forwarded to me.
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